End in Mind.. - Part I

 I have been maintaining a log of some memorable patients and families - some I would be happy to never set eyes/ears on, and some I would love to see outside of the hospital under different circumstances! So here goes. 

But first, a disclaimer: This post, I dedicate to the people who have died on my watch. The identity of the individuals have been changed to maintain privacy. I will share this in 2 parts. Ideas and opinions expressed in this post are my own, shaped by my own experiences. They do not reflect the opinions of my colleagues who may have had entirely different experiences than me under the same system and at the same time. 

1.       Mrs. K – 60 yo delightful lady from Ghana, suffering from widely metastatic cholangio-carcinoma. I had been taking care of her for 2 whole weeks, before she started slowly slipping away. It was challenging to navigate family dynamics between a jerk husband and her devastated sisters. Unfortunately, healthcare doesn’t recognize the power of the human heart; just a worthless signature on the dotted line. The husband was the legal surrogate healthcare decision maker. The one word of advice I kept getting from my supervising Attending was to not get involved in family dynamics. That wasn’t a part of my job. My job was to take care of Mrs. K. What baffled me about this way of thinking was the underlying assumption that taking care of Mrs. K physically and emotionally, was mutually exclusive from enforcing that her dying wishes were honored by the surrogate decision maker. I will never make peace with the fact that I could not reassure her that her wallet and her diary, wrapped in a red plastic bag that she kept under her pillow, would not fall in her husband’s hands, but would be delivered to her 11 yo daughter. When she finally passed on and I was called to the bedside to pronounce her dead, I walked in with as much dignity as was expected of me and asked the husband to step out as I did a confirmatory exam. I finally pronounced her dead at 2:47 pm that afternoon, walked out the door as her husband stepped in, and promptly collapsed. Her sister, who was standing quietly by the door, walked over and tightly held my hands. For what seemed like an eternity, we could not speak, mutually connected in our shared angst at what had transpired these last few days. Finally, she helped me to my feet. And in that split second before her husband came barging out, I pushed the red plastic bag in her hands, as she looked me in the eye one last time and quickly walked away. 

2.       Mr. Mandeerf – 77 yo gentleman also with metastatic cholangio-carcinoma, but presenting very differently from Mrs. K (I won’t go into the clinical details here of course). This guy came walking into the hospital. Very walky-talky for the first few days of his stay. And then it started. A slight ache here. A little bleed there. And so it went, until we all realized it was time for the dreaded family conference. Typically, this can take varied forms depending on how close or far apart you are on an emotional/intellectual scale with the family members. The tone of these meetings completely depend on the temperaments of the family members. I have witnessed several meetings where entitled families think it is their birthright to yell/kick chairs/ and in general behave like uncouth hooligans (“Dozy old bugger”, as Celia from the new Netflix drama might say). Anyhow, for Mr. Mandeerf, his family was his wife and 2 grown up sons. One living here but sometimes working out of Minneapolis! The other one on phone from New York. The nicest family I have interacted with by far! Not to mention that having a gorgeous son in the room never hurts! I have often wondered whether it was because of my fondness for Mr. M and his wife or the presence of their son that made me spend disproportionate amounts of time with this family! Countertransference is a thing, people! 

Anyhow, what I remember most is the family conference I had with his wife and sons. The Attending was happy to let me drive the conversation because I was the one who knew the family best. Prior to the meeting, the Attending went over the exact algorithm for breaking bad news to families. We had a signal planned out for when I needed him to intervene. I took a deep breath and walked in. Mrs. M was sitting on the couch by herself, so I sat next to her. Gorgeous son drew up a chair right up close and had his brother on speaker phone. For a moment I considered asking him to move back because I was having trouble catching my breath (no kidding). I didn't. My Attending sat in a corner. I looked down at my notes and then I looked at Mrs. M and took her hand, unsure where to begin; and the most wonderful thing happened. I had the near-perfect conversation with this family, helping them decide whether to switch their loved one to comfort cares or whether to continue pursuing aggressive measures. And I did it without actually following the algorithm that I had learned by rote. It just came so easily to me. I felt  comfortable in that space, in my role, in my shoes. It just felt right. And I realized it wasn’t me. It was them. How a family meeting will go, completely and totally depends on the family we’re interacting with. Our role as physicians is not to enforce; not to project our opinions; but simply to listen and to provide enough information for the family to make an informed decision. That is all. That is as simple as it gets. Only not.. 


More on this in Part II.